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kdisib

I'll join the "I'm new here" bandwagon - help with symptoms.

7 posts in this topic

Hi! My name is Kristyn and I have recently been diagnosed with Morphea. Initially, the giant bruise like marks on my side were diagnosed as hyperpigmentation. It wasn't until recently, when another bruise like mark developed and stayed, that I went to another dermatologist and consequently received the diagnosis. My dermatologist is good, but he is busier than any doctor I have ever seen - I felt like my questions and possible pertaining symptoms were pushed aside because there was almost nowhere to sit outside in the waiting room that day. I was wondering if somebody more experienced can answer my questions I have about Morphea and my strange symptoms that I believe may be related.

For three years I have itched at night, randomly. No rash, no bumps, no visible evidence of itching, but it would truly keep me up all night. It happened after I got super sick with bronchitis and never went away. My general practitioner performed so many tests (CT scans, blood work, etc.) and found nothing. They chalked it up as stress... But the only thing that was stressing me out is that I couldn't sleep because of the itching! Ever since then I have learned to live with it, even though it still happens occasionally.

My Morphea is present on my upper left rib cage. I have a "burnt out" lesion (?) and an active one - both are very large. Sometimes I get pain right in the active spot. It is especially noticeable on some days (like right now). It aches, and I notice that that area of my ribcage is thicker/more swollen than the other side... Not by a insanely noticeable amount, but it's evident.

Additionally, last year I started having pain in my left leg (the side where my Morphea is present). My general practitioner said it was sciatic nerve pain and ordered a plethora of tests - all coming up to show nothing, again. I'm almost embarrassed at this point to go back to my general practitioner because I am afraid that I look like I am making stuff up, haha. I wish I was!

Has anyone else experienced these symptoms? Given your knowledge of this condition, do you think they could be related to Morphea? My dermatologist somewhat dismissed my questions and said it just effects the skin, that's all. I remarked about pain and he said "no, there is no pain with this" before sending me off with a prescription for steroid cream. I can't help but feel like he might be wrong, though.

I am in my early 20s and I am college student. I am in some sort of discomfort almost everyday and it is kind of depressing me - I feel like I am in my late 70s some days! This should be the prime of my life and I am trying to get answers so I can get back to normal.

Sorry for the novel!

Thank you for any help in advance! I truly appreciate it.

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Hi Kristyn,

I can't answer your questions about morphea as I have diffuse scleroderma but I want to welcome you to the forum. Others are bound to have some answers for you. I know I itched like crazy in the first few years and still go through periods if itching 12 years later.

 

miocean


ISN Artist

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Hi Kristyn,

 

Welcome to these forums!

 

I'm sorry to hear that you've been recently diagnosed with Morphea. The most important thing to know about morphea scleroderma is that it is entirely different from systemic scleroderma — and it is never fatal. Although it is possible to suffer with morphea and also have the systemic form of scleroderma, it is quite rare (step forward, Amanda!) That doesn't mean that it isn't a distressing problem for you to deal with, though!

 

UVA1 phototherapy is now the recommended first-line treatment for morphea and I believe some of our members have had this treatment, with reasonable success. We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge. 

 

We do have quite a few threads on the subject of morphea and I've included a link to a cracking guide about it from Amanda to give you some more help and information.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I also do not have morphea but I have dry skin that itches and at night it seems to itch more than the other times. I've started using a lotion to put on me when I have the itching I also started using a sensitive skin bath soap that seems to help dry skin and that you if you PM me I'll let you know what it is. Good luck to you. My blessings go with you.

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Hi Kristyn,

 

Welcome to Sclero Forums!  I'm sorry you have morphea, but very glad that you've found our online support group. UVA1 Phototherapy is the first line recommended treatment for it, and shows excellent results overall, so you may want to look into it at your nearest opportunity.

 

As it happens, during the inflammatory stage of skin disease, it can cause itching. What's the weirdest of all is that the itching can occur even before there are any outward, visible signs of disease. For many of us, that itching seems to be worse at night, perhaps for a variety of reasons.

 

Sometimes morphea can burrow deeper into the underlying tissues, and raise some havoc. Plus, anyone can get sciatica, even without morphea. The important thing is to treat it, typically with physical therapy, until you find methods that relieve the pain. 

 

Please bear in mind that I am not even medically qualified to trim a hangnail.  That said, I have an unusual approach to dealing with incessant itching. That is, I apply one of those hot/cold arthritis lotions, or an ice pack, at the back of my neck. Our body processes pain from the bottom up, so it will feel the pain nearest to the head, first.  By giving it the hot/cold lotion or cold pack as it's "pain", then the brain has trouble processes any more pain signals and thus I experience the intentional self-inflicted (but harmless) hot/cold pain, which stops me from itching (which always makes any skin lesion worse, sometimes terribly worse or even infected.) 

 

Also, avoiding soap as much as possible and taking baby oil baths can help. See Scleroderma Skin Involvement: Itching on our main site.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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SCL-70 marker, what does a positive test mean? Two months ago I was a very healthy 35 years old male  with two young kiddos. After my grandfather passed, I started having stomach issues which was eventually diagnosed as gastroparesis. A month later I was admitted to the hospital due to intense pain behind my sternum. After 7 days, the once abnormal gastric emptying test was now normalized and all blood work, CT scans, etc came back normal. Esopheagram showed very minor dysmotility with a pill that passed after one sip of water but otherwise was deemed normal. Post stay, it was recommended I see a neurologist who ordered a complete autoimmune panel. Everything came back negative including the ANA-IFA test. However, I tested positive for SCL-70 with a 2.6 score. I have no skin presentation anywhere, no discolored fingers or feet when cold, etc. My wife did notice a few pin sized red dots on my chest, but I've had them as long as I can remember. Normal PFT, normal cardiac work-up. Does this marker mean I have this rare disorder just waiting in the wings? Everything I"ve read states this is only present for Scleroderma. 

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